Struggling With Change

Thanks to a very kind soul, who follows my Instagram @braincancer _babe and who inspired me, I thought this was a great topic to start off this new decade. The idea of change has certainly been discussed throughout my prior posts. Yet, now it’s very different.

I struggle with any kind of major change, like seriously struggle!  However, I’m not one to just sit around day-in day-out, and accept redundancy. I get bored very easily doing the same thing all the time. In fact, it makes me utterly miserable. These two concepts may seem to conflict, but they actually don’t.

As a very simple example, I lived in the same one-bedroom apartment for 17 years. That is pretty much unheard of in the New York City metro area for someone in my age bracket (under 40 years old). Moving and even the thought of moving was horrifyingly stressful. Yet, my resume was full of varying places of work because I found every job, up until my last, so painfully boring. Another example is that I hated being on my couch doing nothing. I always had to keep busy, go out, work out or be active in some way shape or form. Otherwise, I’d be left with my thoughts and I’d drive myself crazy worrying about some meaningless thing. However, I also needed, No demanded, time to just be alone.

My Myers-Briggs personality is something in between an introvert and extrovert. I just don’t remember exactly what it is at the moment.

Anyway, more to my point and what brought me to write this post, is to discuss just how deeply challenging my diagnosis/treatment/side effects of treatment/what-have-you and the changes they’ve caused have been.

In my humble opinion, no one can ever go back 100% to the person they were prior to a cancer diagnosis. You learn to live the “new normal”, as many of us say. I went from being a career-driven litigation attorney in Manhattan, to someone who still cringes when asked, “What do you do for a living?” or when having to check the “disabled” box on any form asking about my employment status. I went from a young woman, who always wore make-up, had her hair & nails done in my 4-inch heels and power suit, to what I’ve donned “homeless chic” (no offense to the homeless). If you’re wondering what that looks like, it’s sweats, sneakers, no make-up, messy hair, my cane, a hat to cover my bald spot, and NOTHING like what I looked like before.

While this all may sound very vain and petty, it’s actually not. As a wonderful nurse in acute rehab told me years ago,”You’re allowed to grieve the former you – no matter what that is.”

Even worse is the total loss of independence. Right now, as I await my 7th brain surgery in less than 6 and a half years, I have no use of my left hand and cannot raise my left arm above my head. My balance and coordination is so off, I cannot be left alone. My husband is with me 100% of the time, minus the occasional trip to the grocery store or to pick-up my meds. Yes, I am extremely fortunate to have him here, but losing every once of independence I once had is mind-numbing. Obviously, I cannot drive. It’s too cold here for me to even go outside because if I do my whole left side tenses-up so much it’s physically painful. I used to constantly work out. Now, I can’t even do physical therapy. Hell, just walking to the bathroom is a feat these days.

Halloween 2019, of all days, I wound up in Urgent Care at my hospital after a bad fall at home. I was admitted, but waited until 4:30 a.m. to get a room. My scan results led to my 6th surgery, to drain the fluid from my brain. Yet, the tumor removals and so much radiation to my brain in 2014 & then 2015 created this cavity in my brain, where fluid will consistently flow into, and cause constant imbalance and pressure inside my head. Thus, there are no other options but this 7th surgery.

I actually fell a few weeks ago. I believe I experienced my 1st concussion. Whoa. That was not fun! Besides being covered in blood by the gash across my eyebrow, I immediately became nauseous and wanted to just go to sleep. I truly saw stars and couldn’t focus my vision. I’ll tell you, I do NOT know how football players do it. (I write this while my husband is literally watching football)

My poor, poor brain!

So, Yes, I hate the negative changes brain cancer has caused. It is an every day struggle to face these challenges! However, as I’ve written throughout this lil ole blog of mine, it has brought positive change as well. I’m not going to rehash them all here, but some very important ones:

  1. I never knew just how strong I was until I had to face this beast and all the havoc it has wreaked upon my life.
  2. I have learned who truly loves and cares for me – and who doesn’t. It’s a painful lesson in many ways, but I found “my tribe” and I’ll never let them go.
  3. I was always an advocate – that’s kinda the whole lawyer side of me; but, I know through my charity work that I’ve inspired people I may never even meet face-to-face. That’s why I tell my story to anyone who will listen. If I help just one person, well then, that’s enough.
  4. I’m not just a survivor. I’m a “thriver”! I took on brain cancer, twice, and said, “Nope! Ya, ain’t gettin’ this stubborn Irish girl” or at least that’s what I like to tell myself… whatever works.
  5. Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.

Being an “Inspiration”

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I’ve had countless conversations with fellow survivors on the topic of whether we are an “inspiration” to others through our fight against cancer. Some survivors embrace it, myself included. However, some are almost offended by the notion. (Disclaimer: I don’t believe either side is right or wrong. I always preface any discussion of someone’s feelings towards cancer as extremely personal, which can never be judged as right or wrong).

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The idea of being an inspiration is something I find myself thinking about constantly. For those survivors who do not see themselves as an inspiration, the most common reaction I’ve heard is that she/he believes that they just simply showed up for treatment and did what anyone else in their shoes would’ve done.

 

One particular conversation that stands out was during my First Descents trip. I sat with one of my fellow amazing survivors, overlooking the Rogue River during our lunch break. It was so peaceful. We were relaxing back in Adirondack chairs, sun on our faces, watching the breathtaking flow of the river beside us. I’m not even sure how the topic came up really. Nevertheless, my friend (I’ll call her C. for short), who had been struck by cancer at a young age, began to tell me her opinions on the subject. Like many others, she did not believe that she was any kind of inspiration. In fact, she gave a good eyeroll about the whole thing. She thought that she had simply done what the doctors told her and that was it.

 

In reply, I shared with her my opinion. She was an inspiration. She faced an incredibly traumatic diagnosis, a particularly rare form of cancer especially given her age and her medical history. Yes, she did what her doctors told her, but she did it. Some can’t even face that decision (ex. I’ve met a few patients who refused further treatment). Then, she took her experiences and wrote her own blog. First Descents wasn’t even her first trip with an organization that challenged survivors through whitewater kayaking. Just months prior, she had been kayaking in Colorado with another organization, which she then began volunteering with. She was always smiling and joking. C. just emanated an air of happiness. So, even if to no one else, she was an inspiration to me.

 

As our trip came to a close, during our last group talk, C. told us all that her opinion on the idea of being an inspiration had completely changed. She now embraced the idea, not just in relation to herself and her fight, but in relation to all of us on that trip.

 

Another incredible survivor I met through First Descents felt very similar to C. about his experience with cancer. Again, he felt that he had just gone through the motions of treatment and that was that. Mind you, he suffered three bouts of cancer beginning when he was just nineteen-years-old, resulting in a stem cell transplant and multiple surgeries to remove several body parts affected by the cancer. I can undoubtedly say that he was not just my inspiration, but a resounding inspiration to each and every one of us. He had been through so much, yet he was one of the funniest, kindest, gentlest men I ever had the privilege to meet. To say he was a true gentleman is a huge understatement.

 

In talking with him, I told him that he was indeed an inspiration. In thinking that he wasn’t, I felt that it diminished all that he had suffered and his tireless fight to continue to be so strong. I’m honestly not sure how he felt about my opinion. We didn’t much talk about it further. I certainly didn’t intend to change his feelings on the subject. Again, whatever he felt is his own and there is no judgment towards those feelings. However, I did want him to know how I viewed him and his life, his challenges and his resounding resilience in the face of so much.

 

As for me, yes, I do see myself as an inspiration. Actually, as I sit here today writing this post, I’ve received two emails telling me how inspiring and moving my story is – one person saying it brought them to tears. I am truly honored when someone says that I have inspired them. If you think about it, people consider having cancer as one of the worst things that could ever happen. To see someone fight so hard in the face of such an overwhelming disease does demonstrate the power and resilience of the human spirit. And this is not to say that those we have lost did not fight hard enough, or gave up in any way. The idea that we are an inspiration simply means that someone can look at us, take what we have been through and honor our fight.

 

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